May 29, 2010
There has been some discussuion in the media about some pharmacies considering and reconsidering whether to offer genetic testing for purchasing. Why would we want to know about our genetic make-up when it comes to health? Why would anyone care if we paid money to purchase genetic testing without our doctor recommending it? How should we be talking about this issue?
Knowing information about our genetic might be one more way to promote our health. As we discuss across the entire book, Talking about health, this era of personalized medicine makes it possible to predict our risk for some conditions. However, as we have discussed in this blog before, knowing that we have genetic contributors to heart disease or that we do NOT have these contributors does not determine that we will or will not get heart disease.
So one reason that there may be concern about giving us access to genetic information through personal purchasing power is that having the test may give some of us a false sense of security and some of us a false sense of ‘doom’ about risk for disease. We may not use the information in ways intended. We may lose sight of the information being just one indicator of possible risk. Remembering that the era of personalized medicine is NOT about single genes predicting absolutely that one will get a disease is a critical part of realizing any benefit from knowing genetic information about our health.
Another often discussed issue is ‘who owns our genetic information?’ While this has been frequently discussed based on concerns about health insurance, we hear less discussion in the media about disclosure to family members. Once we know our genetic information, who should we share the information with in our families? After all, any information we have has some relationship to the biological make-up of other members of our biologically related kin. Should there be any responsibility for telling others about what we learn? Who decides?
We also hear no conversations about the fact that tests can be ‘wrong.’ How should results be treated? If we are found to have genetic predictors of increased risk for heart disease, for example, should we be tested again to be sure the results were accurate? Tested with the same test we purchased? If we did not have positive test results, should be be tested again to be sure that we don’t have the genes? What are the levels of accuracy associated with these tests? How much faith can we place in the results? Does our own human error enter into the equation?
So, yes, we need to be talking about these issues alongside our conversations about making genetic testing available to use in our local drug stores…..
Kyle Sebastian detects many good point on Genetic testing. He is absolutely right about it being new and being new can lead into the unknown. Sometimes we fear the unknown and expect horrible things. I believe the only horrible thing that will come from this unknown will be conflicting with different perspectives of culture’s morals.
I also believe that many great things may come from Genetic testing. Many medical mysterious could be unlocked by the testing. Only the future holds the truth…
Genetic testing is one of a new era. As we make astronomical advances in science and medicine, along comes serious debate. Are they good for mankind? What does God think? Who will benefit? What are the positive outcomes? What could be the negative?
In my opinion as each day passes, is a new day that humans have to advance in intellect and discovery. When it comes to science and medicine and the overall goal is to better human life, I do not see how anyone can reasonably disagree with these advances and new opportunities. Life can be taken away from you at any moment, as I know well myself, therefore we must proceed full-throttle to make a positive impact on the world in any and every way possible.
Genetic testing could be very helpful, but it is a good point – it’s not guaranteed to be accurate. What if they’re wrong, how do we know? Will we be worried about a disease that we really have nothing to worry about? It could be helpful, I can see especially with people that don’t know a lot about their family history. Adopted children, people who aren’t open with their family about health issues, or even people who know nothing about their family at all, this would be very helpful if they were accurate. My family has a strong line of both types of diabetes, all three types of skin cancer and Alzheimer’s. Genetic testing may show me something else we don’t know about my family, or it could just cause me to over react about different diseases that I don’t need to worry about. I think in general you should take care of yourself and be prepared for any kind of disease. We own our genetic information and we should care about our bodies enough to eat healthy, stay active and help fight against any disease possible. Until the inevitable happens and then as long as we have regular visits to our doctor and are open and comfortable with them we will be able to help prevent or take care of anything else that pops up!
Having access to our genetic information is extremely important. My family has a long history of sickle cell anemia. Although I do not carry the trait nor been diagnosed with the illness, my doctor has advised not to reproduce with someone with the disease or the trait. This information is pertinent to me because if I do not want to carry the disease to my offspring. It is a chance that my children will not have the disease or trait if I reproduce with a sickle cell carrier, nevertheless, the risk is not one that I would like to take.
The blog suggests that clinical error is always possible, especially since genetic tests are man made. However, I have always been the type of person to plan for the worst possible scenario. Therefore, I believe in retesting, nevertheless, I’d rather live more carefully in order to protect myself from possible disease. When a test result is positive, I also think that it is important to inform family members. Not only is it important for family members to be tested, but it is also important to have family members for a support network. Support networks are essential both emotionally and for health decision making.
In agreement with the blog’s conclusion, having genetic testing readily available would encourage many people to pay closer attention to their health. Many people are not comfortable expressing their illness with their physicians because of embarrassment, however, if tests were available to purchase in stores, one could deal with the initial upset within their own homes. Having genetic testing available in stores would be more cost efficient for those who cannot afford medical costs. It is imperative to be aware of genetic information for preventative measures and for the sake of family and friends.
To answer the question of who owns our genetic information I cannot think of any reason why each person shouldn’t have access to his/her genetic background if possible. If you decide that you do not want to worry about various possibilities then don’t get tested? Don’t we already have tests that have the same affect on people. A lot of people don’t want to know if they have HIV or STI’s. I don’t see a difference really. The only negative I can think of by making these test available OTC is actuary science departments in health insurance companies. They assess our risk and establish our insurance premiums on those factors. It would be another way they could raise our rates.
I would definitely want to know more about my genetic information. I think it would greatly improve my communication skills with my doctor. Everytime I fill out medical forms asking about my familys’ health history, I struggle to remember who in my family has ever had cancer, which side of the family they were on, or which type of cancer it was. There has been times where I chose not to mention a part of my health history to my doctor because I was unsure of the specifics. I believe knowing would promote more effective conversations between my doctor and I, because he could advise me what preventative steps I could take. I realize that for some individuals, understanding what they are at risk for may cause greater anxiety, but I firmly believe that knowing is always better than not knowing. The only downside I see to genetic testing is the possibility that one day employers might want to know this information for hiring purposes. As long as this information remains confidential, I believe it could be a great tool in prevention and enhancing doctor/patient communication skills.
This is a very good question and something that definitely needs to be addressed. Like others that have commented, it is important in my family that we talk about our genetics because we have a lot of cancer and disease that comes from both sides of my family. Every family member that I had had pass on has died because of some form of cancer and many of my living relatives also have cancer or are cancer survivors. I think that it is important that our genetics are tested to let us know what our risks might be based on results but it would ultimately be up to us to manage that information and make decisions about our health. Another interesting thing to consider with this question is altering genetics. Despite there being a constant moral debate about genetic engineering, looking at it from the perspective of “owning genetics” is interesting. If you were genetically engineered to be different from your family to avoid some sort of disease then how does that change how your genetics are “owned”? I think that there will never be definite answers to either of these since they pull so much on opinion and morals.
I think it is important, now that the technology is available, to offer genetic testing. People have a right to know (if they so choose) what conditions they may be predisposed to, so that they can at least begin to prepare if something were to take effect. For example, if you knew that you were predisposed to heart disease, you may take more cautious steps about eating and when to visit the doctor. I can also see the downside to this, which is people feeling doomed if they find that they are predisposed to have a genetic disorder. But, if we have the technology to offer this to people, I firmly believe that the general population has the right to be tested and access this information.
Since I can remember, there has always been controversy surrounding human genetics. It was not until I became an adult that I understood why this was such a controversial issue. Like most medical situations, there are two sides to the argument. First, I believe that in some situations it is necessary to have access to your genetic information. For instance, I can recall every time I had to go to the doctor being asked my family’s medical history. The information that I gave came from off the top of my head because there was not a lot I knew about family members other than my mother. My father had been deceased since I was five years of age; therefore I was ignorant to his family’s history. In situations like this I feel that it is important to have some access to genetic information in case of an emergency. I believe that there should be certain stipulations and criteria that go along with the testing and the availability of the information. Like Dr. Parrott mentioned, people have the tendency to “doom” themselves when they have access to this type of information. The goal of genetic testing would be to help people understand their biological history, not to harm them. Some people will misconstrue the testing and it could have a number of unpleasant results. Someone could believe that are going to have a certain disease that they may not have and they could also develop an idea that they are not at risk for certain diseases they may actually acquire. For example, I know a girl who was told by her grandmother that they had a family history of hysterectomies. After receiving this information my friend became obsessive about hysterectomies and trying to prevent having one. She spent hours in and out obsessing about the situation. I feel that the information drove her crazy, making her mental state worst than it was before the information was released. Factors such as this must be considered when thinking about making genetic testing available to the public. People are going to want to know as much information as possible so that they may understand what is taking place. Socioeconomic issues, health literacy and disparities, and testing accuracy all must be addresses prior to making any decisions on the matter. The question I believe should be addressed is whether or not the public is stable enough to deal with genetic testing and what comes along with it.
Communicating is probably the most important thing one can do when wanting to learn anything. People from past experiences are able to give firsthand knowledge, thus providing the most useful advice. So when asking about genetic health with family members, how do you begin this conversation? It is certainly not dinner conversation topic or party worthy. My family has a general rule, we aren’t supposed to bring up politics or religion, but nobody ever initiates a health topic either. It is certainly never on my mind.
Dr. Parrott mentions if we find out information about our family history it may cause a sense of “doom” or “false sense of security” about the risk of disease. We live in a world of fear already, what’s one more thing going to do if we learn we could have possibly contracted a disease genetically? Besides when we do have the tests and results come back, we should have a strong social support group around to help guide us through this rough patch in our lives; even if it is simply providing informational support to help prevent the disease.
My family has a history of Alzheimer’s disease, however, there is nothing that we know of to prevent this from happening. The disease will eventually change our lives as we grow older. We know this is scary because who wants to live a life where they forget everything, so we cherish the moments we have with each other because someday we won’t remember. Links to genetic information could help shape our future.
I think these are some great and important questions to consider. Knowing information about our genetic health could definitely help promote staying healthy in the long run. I agree that one of the main concerns about giving us access to genetic information is because of giving us a false sense of security and doom. Some people believe everything they read. However I think it would be better to know this information. It can sometimes be true that you read something about your health and instantly believe it. I think this is what people are afraid of with genetics. I am very interested in the questions who owns our genetics? I mean really who does own that information? I think there should be responsibility for telling others about what we learn because it is important. Right now it seems that it is a good idea to share genetic information, but in the future will it be for better or worse? This information is important and needs to be protected in some way. I remember last summer I had really swollen ankles and feet, my parents and I had no idea what it was from. We started thinking about if I had every experienced this before and if I used or ate anything different. We came to two conclusions, I either had an allergic reaction to lotion or maybe I have diabetes. My great grandpa had diabetes so my parents thought maybe I had it because certain areas of my body will randomly swell up. Looking to my family history and what I know about genetics is what lead my parents and I to even consider this. We were able to rule that option out once I got tested, but had it not been for knowing my family history I probably would not have considered that as a potential reason. Genetic information is valuable and decided who “owns” it can be tricky to pin-point. I think understanding our genetic makeup is important and should not be overlooked.
I really like some of the questions you raised with this post, and we to start thinking about them as a nation. First of all, let me say that I am in favor of having genetics become a part of one’s health equation. Even though we don’t know quite what to do with it yet, it can be more valuable in the future as science makes progress. My mother has a type of sun exposure disease that has no name to this point. She underwent many tests to find out what it is but never got a clear answer, she just calls it “sun poison”. Now that I am older I am starting to experience the same condition after having played sports in the sun for many years as a youth with no protection. If I had some genetic info it may have influenced how long I was in the sun or my use of sunscreen. But I think the bigger question is who owns and has access to our information. As you mention in your book we must be concerned with political and religious agendas. If the past is any indication, they will want to get their hands all over this issue. While I do think it is a good idea, I also think this can be big business for a select few. Once money enters into the equation things always change, right now it seems to be from a more purely scientific pursuit. I think it is a real possibility that people will be labeled in the future based on genetics for better or worse. I can see people be denied rights or over-charged based on genetics as well. I propose genetic “bill of rights” to ensure that once everyone has this info it is handled properly.
I totally agree with Julie. I think it is so important to know which diseases tend to run in your family so that you may lead a preventative lifestyle before you contract the disease. If breast cancer is prominent throughout your family and you are able to find out that it is actually genetic, you could get proper screenings more frequently to catch the disease earlier to improve your chance of survival. I really believe that you should be proactive when it comes to health. If you have the ability to do something to help improve your health, you should do it before its too late.
I agree that this is an important question in terms of health communication, especially with the new technologies that are arising to allow people to determine their risk for certain diseases at young ages. Everyone is different in terms of the way they perceive the choice of learning this information. Some people may not want to know if they have an increased risk of for a certain disease (such as breast cancer) because they don’t want to be plagued with the worry that they will develop the cancer. Others feel that it is the better to view or appraise the situation as an opportunity to prevent a negative outcome, by determining their risk level early on and receiving screening accordingly. Although it is not as serious of a diagnosis as breast cancer, my mother’s side of the family tends to have high cholesterol. For this reason, I will begin to have my cholestorol level checked earlier than many of my peers so that I can prevent possible negative consequences. This seemed like a fairly easy decision for me because there isn’t a lot of stress that comes with a diagnosis of high cholesterol, however, I can understand why individuals might not want to know their risk level for diseases that they cannot prevent even with proper screening procedures. It seems to be a very individual choice that can be facilitated through communication with a doctor as well as the person’s family to determine what’s right for them.
I also agree that communicating with family members about family health history is very important. It makes an individual aware of specific diseases to watch out for and also get screened for more regularly than others. I always refer to a personal story of mine when talking about this subject. A few years ago, my cousin was pregnant with her first child and had major complications during delivery. It was discovered that she had a blood clotting disorder that caused her body to naturally clot blood much easier than others. She informed our family and my mother had both my sister and I tested for this disorder, my sister ended up being positive and her OBGYN would not prescribe her birth control because of the blood clotting risk. If it were not for my cousin sharing this information, my sister might have never known she had this disorder until it was too late. I believe genetic testing can be a valuable tool for individuals who do not have access to family health history, however I believe it should not be over the counter and instead left up to the physician, so that the information is not abused or interpreted in the wrong way.
Genetic testing is an interesting area. As far as our genetic information, my belief is, we own our information. Like a blood test or test results… the information comes from us and belongs to our health information. Our genetic information is the same way.
Genetic testing on myself would be interesting to see what comes up. I don’t believe that anyone should use genetic testing to determine how they take care of their health medically. The information would be nice, because they would know if they are at risk for heart disease then they could start a heart healthy diet and watch certain things. But medication or treat wouldn’t be a correct step because it’s a risk, not a proven fact. No one knows if they will get something like heart disease. But using it as a way to take care of yourself, would be helpful.
This is a great question. I think this is an important conversation to have with your family about risk factors and what not, but knowing only goes so far. On my dad’s side of the family, colon cancer and colon diseases are very prevalent. My dad as lost his mother, his brother, his dad, and I think 2 or 3 uncles/aunts to some form of colon cancer. My dad has always talked with his about how we are at a higher risk because of his family’s history. Because of this my older sister, twin brother, and younger sister will all start getting colonoscopies when we reach the age of 24 and will have one every two years. Because my dad was so open and honest with his risk factors, none of us believe that we are “doomed” to get a colon disease. However as a family we decided to be proactive and take (maybe unusual) additional measures to ensure our health. Recently after my older sister’s first colonoscopy, the doctors found a very rare non-cancerous tumor that grows at a very rapid pace in her bowel. Even though its scary, each of us needs to be knowledgeable about our family background and our genetics so we can own our own health and be proactive about it. I’m a firm believer that knowledge is power and the more you are aware of your health the more in control of it you will be.